Can anyone help with some advice on LPR?

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First of all, it's such a relief to find this forum!  I'm a 45 year old woman and like a lot people here, I've recently been diagnosed with LPR and have been prescribed PPIs.  My other symptoms are a painful burning mouth/nose and sore throat.  I've also just dealt with some awful sinusitis which seems under control now after 2 weeks of antibiotics.  I also wear a denture and as a result of the sore throat, I can't wear it as it's reacting with the sore throat sad  Anyway, that's my story....I just have a few questions which I hope someone can help me with.  First of all, if you keep taking PPI's and make serious lifestyle changes, does this condition eventually resolve itself?  Or are you on PPIs forever?  My mouth really burns and sucking on sugar lollies helps temporarily but I really don't want to keep having sugar or even sugar free lollies.  Any other suggestions to help subside the burning?  I've lifted up the head of my bed which seems to help.  Yikes!  Such a horrible and painful condition, any info, particularly natural healing methods would be much appreciated (as I don't like these drugs), thanks guys smile

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  • Posted

    Hi Sally I hope this helps you.  I may be wrong but have researched all of this stuff a lot and hve my own experiences with ppis etc.  I cannot see any reason why you hvae to take them forever.   Some take them for a few months, some years but it is rare for it to be forever.  It is best not to take them forever beeause of their side effects and how they eat up your nutrients.  When  the time comes to come off of the ppis please try to remember that you may find it hard to gvive them up and think this means that you ought to continue with them. A lot of doctors say that if your stomach hurts etc when you try to stop taking them this proves you still needed them.  I don't agree. I think it proves your stomach is adjusting to being full of acid again.  Last year I persevered with coming off of them and after a bit my stomach was fine again.  I had a lot of trouble with sinuses and headaches and then ears and am sure the two are related and that the acid reflux thing causes the sinus problem. You are right not to want to have sugar or substitutes. Sorry I cannot advise on the mouth burning thing, have never had that.  My thing is constant headaches and stomaches.   If I were you I would use this forum to learn and research (it is far better than talking to doctors or reading through lots of articles)  and to get support whenever you needed it. We all want you to feel better soon.
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    • Posted

      Thanks Carmel!  It's a relief to hear that it doesn't have to be a life sentence.  I was on the ppis for two weeks and went off them again after thinking it had gone away.  After joining this forum I've realised that the burning mouth etc. is the reflux so I've gone back on the them again, this time I'll take them for a few months as you suggested.  I did find that when I went off them, all the acid started coming back in a big way which I've read is a rebound effect (makes sense).  I'm sure that the body would eventually adjust.  I'm also having sinus problems and like you, I'm convinced that the two are inter-related somehow.  Another reason I went off the PPIs is because I thought it was the sinus infection affecting the throat and causing the burning mouth, but I know realise it's the LPR.  Thanks again for your comment, it's great to find such terrific support!
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    • Posted

      You are very welcome Sally. It is good to chat to someone who knows what it is like to have sinus AND acid relux and realises they are connected. Do you also get headaches? I do find it hard to get doctors to understand about all this though, they tend to look at individual bits and pieces without the whole picture and like to think we cannot be getting  it right as we are merely patients. Yet we may have studied it far more than them.
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  • Posted

    Hi Sally, I too have LPR, just recently had a terrible flare up which I have got under control. Are you in the UK? I take PPIs and also Domperidone and Gaviscon Asvance after every meal and before bed. I've found that that is the thing that works best for me. As soon as I cut back the burning started again. The gaviscon advance stops any reflux coming up ( you only reflux the gaviscon) but I know it's a different product in the UK to the US. In the UK it's an alginate - made from seaweed, the US version is made by a different company and is more of an antacid. 

    I'm at the stage now where I've come to the conclusion that it's not acid that is causing my problems, and I'm waiting for an appointment for an Impedence PH test to see exactly what is coming up, with a view to surgery - the only sure fire way to stop the reflux. Scary but I think that it is maybe for me. 

    How long have you been on the  PPIs? They do take a while to work. I can say that after 2 months on them and the Gaviscon, a second gastroscopy showed that my oesophagus had healed and a laryngoscope showed the same with my throat so it is worth persevering. I'm sure there will be plenty of help from other members, you have to find what works for you. There's also a good Facebook page - if you put Refluxhelp in the Facebook search it will bring up a page called justpassingthrough - plenty of help on there from fellow sufferers . Good luck xx

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    • Posted

      Hi Stella, thanks for your reply.  I'm in Australia but I think we have Gaviscon here as well.  As I mentioned in my reply to Carmel, I'm going to go back on the PPIs now after realising that the burning mouth etc. is one of the symptoms.  I took them for 2 weeks initially and did feel better, but then went off them.  I'm now going to go back on them again for a few months just to try and get things to heal and settle down.  I'll check out the facebook page you recommended.  Thanks very much for your comment.
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    • Posted

      p.s.  When I took cimetidine after a while I found that it helped my  sinuses and ears and headaches a lot. The first doctor I said about this to said it was coincidence and that this medication can also help sinus problems, so I said isnt that because the acid is coming up and causing it and she could not see the connection, to her they were two things and a big coincidence. The second doctor I spoke to agreed that one caused the other.
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    • Posted

      I definately think the two are connected.  Lot's of people seem to have problems with both the sinus and reflux at the same time, can't be a coincidence.  This forum is great because the ENT didn't tell me half the stuff that I've read here.  I thought the burning mouth was something weird and unheard of but it seems it's a common complaint with LPR
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    • Posted

      Totally agree. The Ent do not usually agree with this though so it is tough to get them to take this on board. Hope you feel better soon.
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      p.s.  Afte taking cimeditidine for a few months went off of it for a few days and back on it again.  Totally different now, does not seem to work the same.
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  • Posted

    Ps Sally, to stop the burning sensation try chewing whitening chewing gum ( the whitening gum has bicarb in it and is naturally alkaline) and also swilling your mouth out with water - alkaline water is best. Here in the UK you can get water, it has a ph of 8.2. Having a drink of this after every meal and swilling your mouth denatures any pepsin - this could be a cause of your burning mouth that the ppis won't touch. Sorry for sounding like an ad for gaviscon but this also sieves pepsin out and helps protect your throat x 
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    • Posted

      Excuse me but for alkaline water with a ph of 8.2 you can get those alkaline drops you put in water or put rods in the water to charge them with it and minerals.
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    • Posted

      Saw the rods on amazon they were about £13 for one or cheaper in bulk. The drops were something like £30 for a small bottle but I would imagine that goes quite quick. Supposedly raises the alkaline from about 7 to about 9.
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    • Posted

      Thanks for the tip!  I've been using chewing gum recently which provides a lot of relief as long as you keep chewing it.  I think it's better than the sugar lollies.  I'm not sure what the water is.....I'll google it and see if I can get it here in Australia.  I've recently started using filtered water as I'm convinced the flouride/chlorine is contributing to the burning.  I'll get some gaviscon as well...thanks smile
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    • Posted

      I'll check out the alkaline drops you've mentioned....Hopefully they sell them at the health food shop here.  Thanks smile
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